Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

A few months ago, there was a wonderful conversation in the blogosphere about gender presentation and disability. Jumping off from bfp’s what is butch? (check out the comments for some interesting disability discussion) a range of commenters and bloggers had something to say, and it evolved to have a strong disability focus. Here are extracts from some of the posts:

our bodies are objects that are not supposed to belong to us and by recognizing our genders, it implies that we own our bodies, think about them, take pleasure in them. maybe this is a big jump but to me, affirming our gender also recognizes our personhood: it says we are human and have a right to not have our bodies raped, abused, sterilized, experimented on, harvested, and more…

My decision to wear impractical shoes is as much a consequence of me not having to walk in them as it is a decision to participate in a particular understanding of femininity. But what do you see? A sad attempt to look normal? A pair of high heels on a woman? Or something so over the top that it slides into the devotee/fetish view of disabled female sexuality? Note that this is a risk that is only present for disabled women. It’s a long way for nondisableds to go through femme to fetish. Merely presenting certain aspects of traditional femme for a queer disabled woman puts her at risk of becoming a usually straight object of the devotee community.

Myself, I like skirts and jewellery and what my stylist friend calls romantic clothes, but I can’t be doing with discomfort and material frivolity. I can’t cope with it in terms of pain and energy levels, and I can’t afford it. So I break the rules.

I don’t want to talk about my gender presentation as it ties in with disability, because it also interacts with race in some painful ways I am not in a space to discuss as well as some class issues I haven’t properly examined. And, indeed, I don’t feel right defining, settling into a particular mode of presentation, at least for now. But that’s no reason you can’t talk about yours. How does your gender presentation interact with your disability, your sexual orientation (or lack thereof, if that’s how you frame it) and your life history?

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentallyuncomfortable owning up to our own power.

FWD/Forward is all about the intersection between feminism and disability issues, so it’s worth talking about why I think (know) disability is a feminist issue. I’ll note that this post is not intended to be a comprehensive review, nor is it intended to be the final word on the matter. It’s just a brief primer. Also, fair warning, I’m a bit jived on asthma medication right now, so this post is a bit slangier and more sarcastic than my usual oeuvre.

The short version of the reason that disability is a feminist issue is that some people with disabilities are women. I know, shocking! But I’m here to tell you that it’s true. And I don’t speak from purely anecdotal evidence. According to the Centers for Disease Control*, approximately one in five American women is living with a disability. So, people, science says that some people with disabilities are also women.

So, if you identify as a feminist, presumably you are doing so because you care about women and issues which affect women. If an issue affects one in five women, it’s probably something which you should care about.

But, there’s more!

Did you know that women with disabilities are up to twice as likely to be victims of sexual assault and violence? Those certainly seem like feminist issues to me, so it seems worth examining why one in five women is at a higher risk of experiencing violence.

Did you know that people with disabilities are also twice as likely to experience poverty and unemployment? Poverty and unemployment are also considered feminist issues by many feminists, in no small part because they tend to disproportionately affect women. So, if you have conditions which already disproportionately affect women involving some women more than others, again, it seems worth exploring the causality behind that.

Did you know that the wage gap is also more severe for people with disabilities? The wage gap is often identified as a key feminist issue; it’s the thing that a lot of non-feminists think about when they hear the word “feminism.” Again, if you have a problem which is recognized as an issue which affects women and you find out that women women experience that problem at an even higher rate than ordinary women, isn’t that a feminist issue?

This is called intersectionality, people. It’s the idea that overlapping and interconnecting systems of oppression are involved pretty much anywhere you feel like looking. Now, every single feminist in the entire world does not need to address every single overlapping system of oppression which touches women. But every single feminist in the entire world does have an obligation to make sure that deliberate harm is not inflicted by ignoring intersectionality. That means that if the focus of your feminism is, say, sex positivity, you need to think about sex positivity beyond pretty white straight cis people without disabilities. Because, if you don’t, there’s a chance that you, yes, you, are hurting people with your feminism. And not just people in general, but other women!

And, I would like to point out that this is an argument so simple that even my father, who is the most un-hip person you can imagine, who scratches his head when he hears the words “intersectional feminism,” gets it. So if my dad can get it, you can get it, seeing as you are presumably interested in feminism and disability issues, since you’re reading this site, which means you’re already ahead of my father.

*Have you ever wondered why it’s called the “Centers for Disease Control,” instead of the “Center for Disease Control”? It’s because it’s the “Centers for Disease Control and Prevention,” which is somehow magically acronymed into CDC. Who knows where the P went!

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.

Hello, everyone! I am Annaham of HamBlog, and since I’ve written a Disability 101 series of posts, I thought it would be a good idea to cross-post some of the series here. My inspiration was piqued by the Finally Feminism 101 blog, which is brilliantly maintained by tigtog of Hoyden About Town. I hope that this series will answer some 101-ish questions about disability. My hope is that this will serve as a starting point for people (of all abilities) who wish to learn more about disability, chronic illnesses and health conditions, and the issues surrounding disability/CI/CHC terms, etiquette, and frequently-asked (and pontificated-upon) questions. (In case you’re wondering who the hell I am and/or why I am taking on this project, my bio is located here.)

If you have any comments or suggestions, please feel free to leave them in the comments field. Please be respectful and on-topic when commenting.
Also, please keep in mind that I do not speak for *all* PWDs and folks with chronic illnesses or health conditions in this series. It is not intended as “the” guide to 101 questions on disability; my intent is to offer (pretty subjective) answers to common questions on disability, and of course, there will be folks who disagree.

Thanks, and enjoy!

What is “disability?”

The World Health Organization defines “disability” in the following way: “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”

Additionally: “[D]isability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” [ Source]
But aren’t we all disabled in some way?

No. This sort of “folk wisdom” implies, directly or indirectly, that mundane things—things that may be minor inconveniences (at least for some able-bodied people–those with whom this bit of “wisdom” seems to be most popular), but that are not fundamentally impairing or restrictive to one’s quality of life or participation in civic and/or private life—are disabling, when they are, in fact, not. Disability, additionally, is a term that refers to a long-term or lifelong condition.

What is “ableism?”

Ableism refers to discrimination, devaluation, misconceptions, stereotypes, and prejudice—conscious or unconscious—of and against people with disabilities, the chronically ill, and people with chronic health conditions. As a culturally-based structure that often intersects with other oppressive “isms,” systems of privilege, and “-phobias” (such as racism, sexism, homophobia, xenophobia, white privilege, cisgendered privilege, class/economic privilege, and transphobia) ableism assumes that able-bodied people are the “norm” in society, and as a result, culture, various institutions, attitudes and social mores are formed in accordance with the needs of able-bodied people.

What is meant by the terms AB and TAB?

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.